Sunday, 10 April 2016

Life is a journey from disability, back to disability

We are born with disability, may become temporarily able-bodied and, then, as we age, return to disability. When we realise this, our imaginations can broaden to embrace all, and we can then be a truly caring community.By Chong Siow Ann, Published The Straits Times, 9 Apr 2016

"Killing a disabled infant is not morally equivalent to killing a person. Very often, it is not wrong at all," wrote Professor Peter Singer, the Princeton University philosopher, in his classic text Practical Ethics which was published in 1993. In his subsequent published works and lectures, he has consistently argued that if the parents of a severely disabled newborn infant and their physician "are in agreement that the infant's life will be so miserable or so devoid of minimal satisfactions that it would be inhumane or futile to prolong life, then they should be allowed to ensure that death comes about speedily and without suffering".He has also articulated that stark utilitarian argument: "When the death of a disabled infant will lead to the birth of another infant with better prospects of a happy life, the total amount of happiness will be greater if the disabled infant is killed. The loss of happy life for the first infant is outweighed by the gain of a happier life for the second."These views have understandably upset many people. When Prof Singer said in a radio talk show last year that it is "reasonable" for government and insurance companies not to pay for treatments given to severely disabled infants, the United States National Council on Disability (NCD) posted a robust response on its website.

It points out that the medical profession often gets it wrong when it comes to predicting the outcome of a condition. Individuals with disabilities and parents of children with disabilities often receive an initial dire prognosis which eventually turns out to be inaccurate if not erroneous - particularly when it comes to the person's future quality of life.

NCD cited findings of a nationwide survey which found that a large majority of disabled Americans - including those with very severe disabilities - were satisfied with their lives despite their disadvantaged status and exclusion from activities accessible to the rest of their compatriots.Noting the tendentious mistake of those without disabilities to simultaneously exaggerate the negative aspects and discount the positive features of the lives of those with disabilities, NCD also expresses its dismay that the "attitude of 'I don't see how you can live with that' - sometimes expressed more dramatically as 'I'd rather be dead than have (x disability)' - is one that people still shockingly profess openly in encounters with people with disabilities".

Such blinkered attitudes are not only the manifestation of the prejudice and ignorance towards people with disabilities but they also reflect an unspoken sense of unease, awkwardness, fear, relief and guilty revulsion. This is ironic as hardly any of us would be spared from some form of disability or another - it's just a matter of time."The cycle of life runs in actuality from disability to temporary ability back to disability, and that's only if you are among the most fortunate," noted the disability-rights scholar Tobin Siebers. Disability activists often refer to those without physical or mental impairment as the temporarily able-bodied or TABs to emphasise that the border that separates the land of able-bodied and the land of the disabled is porous: anyone can enter - transported across in times of illness or injury - and leave when they recovered, or perhaps not at all.

Live long enough to experience that diminishment of faculties and creeping decrepitude of old age, we will make that border crossing to become citizens in the dominion of the disabled.THE IDEAL OF INCLUSIVENESSOur attitude towards those with disability goes to the heart of how we think of and relate to each other. It raises questions on what we value in others as fellow members of a society, and the concept of an inclusive society.

Much of our success as a nation has been driven by that creed of meritocracy which at its core is the praiseworthy egalitarian principle that everyone should have a shot at success. This success is usually secured by being ambitious, competitive, overachieving and productive; and is usually judged by one's position along that wealth and power gradient. In the face of such material pragmatism, people who are not productive in that narrow economic sense would be seen as a drag and drain on the whole society.

In 2004, Prime Minister Lee Hsien Loong envisioned Singapore as a "fair and inclusive society, where every citizen has a rightful place and the opportunity to fulfil his or her aspirations".

This led subsequently (in 2007) to the first Enabling Masterplan that carried with it the ambition of "making Singapore an inclusive society where persons with disabilities are given the opportunity to become equal, integral and contributing members of society".

Since then, there has been a second masterplan which built on the previous initiatives in early intervention, education, employment, residential care and caregiver support - all of which have made life better for people with disabilities though, as to be expected, there are still many gaps.

The Steering Committee to develop the third Enabling Masterplan has recently been appointed by the Minister for Social and Family Development and will "address current challenges, in particular areas where there has been less focus in the past", said Ms Anita Fam, who chairs the committee. I am a member of this committee.

One perennial challenge is the general perception of persons with disabilities who are often stigmatised as being less capable, who require a great deal of costly assistance, and who are unable to pull their weight in society.

The truth is that many people with disabilities are living a rich, fulfilling, purposeful and productive life - individuals like the two Chia sisters. Both were diagnosed in childhood to have peroneal muscular atrophy - a condition which causes progressive loss of muscle tissue and the sensation of touch in different parts of the body.

Both went through mainstream schools, then to law school. The older sister Yong Yong became a corporate lawyer and is the incumbent president of the Society of the Physically Disabled and currently in her second term as a Nominated Member of Parliament and a member of this Enabling Masterplan Steering Committee.

The younger sister, Leslie, who also went on to become a lawyer, is now the deputy director (projects) in KK Women's and Children's Hospital, and vice-president of the Beautiful Mind Charity, as well as an intrepid traveller.

To know them is to admire what they have achieved, given the daunting difficulties (trite as it sounds, the word "inspirational" inevitably comes to mind). One is also inclined to celebrate that thing called the "indomitable human spirit" - although the two sisters don't see anything extraordinary in what they have done: They maintained that they had simply tried their best in the things they do.AN EXERCISE IN IMAGINATIONBut there are individuals with profound disabilities. It can be far more challenging to see the human worth of those people with profound disabilities who would never be able to cogitate, communicate nor ambulate, and who need to be fed, washed and dressed.

But if we could imagine ourselves or someone we love or know in that situation, or imagine the feelings of their parents who love them despite what they are - that exercise in imaginative sympathy and identification will enable us to see and feel that common and shared humanity.Marilynne Robinson, the Pulitzer Prize-winning author (President Barak Obama is a long-time admirer of her), wrote that a community is "a work of the imagination" and a community which insists "that the imagination must stay within the boundaries… that sympathy and identification are only allowable within certain limits" is a community that is "exclusive and defensive".

On the other hand, "the more generous the scale at which imagination is exerted, the healthier and more humane the community will be".

Salutary to the development of this more capacious imagination is the knowledge that nobody is ever truly self-sufficient: We are more connected to each other than we realise and our life comprises interwoven relationships of varying dependency.

And it is also sobering and edifying for those of us who are TABs to realise that life could easily throw us a curve ball at any time and pulverise us into a helpless and dependent state.

In that situation, we will know at first hand the physical discomfort, the frustration, the hitherto unknown challenges and restrictions; others will either gawk at us or avert their eyes from us; and we will experience the insensitivity, the condescension and bigotry of others. The more we feel and experience of these, the further we know we are from that ideal of inclusiveness.Professor Chong Siow Ann is vice- chairman of the medical board (research) at the Institute of Mental Health and a member of the Enabling Masterplan Steering Committee.